Recently, I had the pleasure of speaking with Dr. Carol Kasper, a highly regarded hematologist who has dedicated her life’s work — over 40 years of research and patient care — to individuals with hemophilia. Although Kasper retired three years ago, she continues to…

I’ve always had a hard time coping with the fact that it’s quite difficult for me to find a decent source of income due to hemophilia and epilepsy. Although government and private institutions say that they are inclusive of persons with disabilities (PwDs), the reality is that discriminations against…

Structural joint damage and significant pain are evident in the ankles of people with hemophilia, but the two were not found to be related to one another in a recent study. Researchers suspect that ankle pain may originate in the somatosensory nervous system, which relays nerve signals from the…

One thing that moves me is watching my sons find pockets of time when their bleeding disorder doesn’t take center stage in their lives. During these periods of freedom, time seems to suspend itself for a moment, and Julian and Caeleb are able to live their best lives without worrying…

My daughter, Cittie, is now 3 and a half years old. She’s grown so much over the past years, from a tiny and helpless little baby to a more independent preschooler with a mind of her own. She’s gotten good at expressing what she likes and dislikes. She’s also…

Scarcity mindset is the belief that something you rely on will one day run out. It’s most often talked about in the context of money, which resonates with me deeply. As a neurodivergent person married to someone with hemophilia, money has always felt like one of my shields…

Bioverativ will present some of its most recent therapeutic advancements regarding hemophilia and other blood diseases at the 60th Annual Meeting of the American Society of Hematology (ASH) in San Diego, California, Dec. 1-4. The company, which is part of Sanofi, has focused on the development and commercialization of innovative…

My alarm rings every day at 7 a.m. I get out of bed, brush my teeth, take my medications, and start my day. As the coffee maker begins to brew a fantastic cup of decaffeinated piñon coffee, I take my girls — my dogs, Laggie and Hildie — outside. I…

My husband, Jared, is a diligent worker and constant high achiever. An honor student in school, he has since excelled in various fields. From running a business to trying his hand at voice acting and cooking, he’s a jack of all trades in the most complete form of the…

The U.S. Food and Drug Administration (FDA) has accepted — under priority review — a marketing application for Valrox (valoctocogene roxaparvovec), BioMarin Pharmaceutical’s investigational gene therapy for hemophilia A. This is the first time the FDA has accepted an application for a gene therapy specifically…